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Author
Topic: Secrecy vs. Privacy (Read 6359 times)

BeTheLove

Once in awhile I go to bed listening to the Dr. Laura show on my radio. My friends think I’m nuts, (they hate her with a passion.) But I like to keep my enemies close, and she is certainly an enemy to my liberal views. Plus she cracks me up. I actually look forward to hearing her sometimes make a complete ass out of herself. And then there are times that she sparkles through with the most loving and gracious advice for someone that I find myself teetering back and forth from loving and hating her.

Anyway, she recently posed an interesting distinction between “Secrecy” and “privacy” that I thought might be good to discuss in this forum…especially with all the talk about HIV disclosure. It hadn’t even really dawned on me that there could be a difference between secrecy and privacy.

I had always equivocated secrecy to shame—and thus didn’t want anything to do with it. And I realized that when I tested poz I was sliding into a hole of secrecy:

“God is punishing me,..I’ve really done it now.”

“I don’t deserve to be loved…here’s the proof.”

“I had to be one stupid woman to believe that my boyfriend loved me when he knowingly infected me with HIV.”

“Look what I’ve done to my family! I couldn’t shit on my parents and their love for me any harder than if I had robbed a bank or shot the Pope.”

“Now your friends will know how damaged you really are. They’ll be afraid of you and run away. You won’t be worth their time anymore. You used to be fun, but now you’ll just remind people of the risks they take with their own sexual freedom and they’ll hate you for it.”

I could go on, but you get the point. All these thoughts had me wanting to pledge to keep my secret to myself. But I couldn’t. I knew in my heart I could not be true in so many of my existing relationships without revealing this truth. I shared my story with these five friends, one at a time, and each one rose to my fears, tears, and emotional trauma beyond what I could ever have expected.

I have sense told others who bailed—they couldn’t handle it, projected their own fears onto me—and that’s okay too. I found myself moving into the space of “this isn’t about whether or not I’m good enough to be in someone else’s life, this is about whether or not someone is good enough to be in MY life!” (Sometimes I just have to love my BIG EGO)

So in regards to privacy, I share my HIV status when it is appropriate to do so. When it can support another, support myself, support a client (I work with people who suffer from chronic illness.) I consider who I share with and who I don’t as my own privacy act. There are other things in my life that I keep private too. I don’t tell everyone the details of my love making with my partner—that’s for me to marinade in, but it’s not a secret either. It’s just something that for me is more appropriately shared with my partner and myself.

So I’m curious. What’s your take on the difference between privacy and secrecy? Are you private about your HIV status or secretive? Do you think there’s a difference or am I just mincing words?

Well, I think privacy vs. secrecy is all in the eyes of the beholder. I, myself, don't announce it to my neighbors; but I don't hide it if I get to know someone either. Some people cannot disclose because of extreme prejudice in their towns, families etc.

In a way, I have an advantage to this type of thing; I'm a woman, and I got it from my 1st husband. So people (might) look at that a bit differently vs. someone who got it from IV drugs, slept around a lot or is gay. I used to use IV drugs, but stopped like back in 84. And I did sleep around a lot when I was younger. But a lot of people don't know that about me. I've had my share of STDs, but people don't know that either.

It's all up to the person. I don't believe anyone should be told they are absolutely wrong or absolutely right.

Oh, I equate Dr. Laura with Rush Limbaugh. I don't like either.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

In this day in age, does privacy really exist? Yah, everytime you go to a new doc you read and sign a privacy act but how do you really know who sees your information and what they do with that information.

Everyone gets calls all the time from people who aren't supposed to have thier number.

Everyone gets mail, from people who shouldn't have thier name and address. A friend of my mothers had a subscription filled out in thier dogs name and they always get new mail for the dog.

I could pay 50 bucks right now and with someones name find out-if they have filed bankruptcy, have a criminal record, thier brothers and sisters names, all kinds of shit.

Secrecy to me, is my personal shit, that know one could possible know unless I told them. I only care if people I know find out my secrets.

I have never listened to either person.

Snow

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Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

BeTheLove

You wrote; "the idea of privacy makes me more comfortable about non-disclosure if it makes any sense." I think it's because privacy feels much more like a conscious choice whereby secrecy can feel more like a "have to". I think of privacy more as a choice vs. a necessesity-- at least in terms of the HIV thing.

While in the ER at the VA hospital with my sweetheart he mentioned his being a patient there at the HIV clinic. The doctor looked interested and I cant recall what he said but I joked back at him that you get a better perspective of life when you have a terminal illness. I told him I was also HIV positive and that my sweetheart had been positive 18 years or so and I had been positive roughly 15 years. He looked a little surprised but was trying to hide any reaction. Based on his reaction and body language I told him that Billy was not the person that infected me that we had met after the fact.

Boy it was pure delight watching that young doctor squirm. He changed the way he had been looking at me before. He started looking at me with more of a curious eye. Like he had a million questions and couldn't ask them because he felt it might be inappropriate.

I get a kick out of the reactions I get from some people when they find out I have HIV.

I do not tell many people I am positive. I think that the word secrecy makes it sound as if you are ashamed and hiding. The word privacy sounds like you are keeping information to yourself because it isn't other peoples business.

Due to being outed about my status by my sisters and not given the choice to disclose. I say it is secrecy and privacy if that makes sense. I will not front, I have had sex w/o disclosing but I kept it safe. When I feel comfortable enough with someone then when the time is right, I will disclose. The only people I make aware of my status from the door is doctors or nurses so that they protect themselves. But I have had nurses draw blood w/o even wearing gloves but knowing they are drawing for cd4 and vl. Because of what my sisters did, I no longer believe (at least where I live) that I can trust to share my status with anyone other than someone I know who is poz. I joke and say the only poz people in my town are me and my gay friends because everyone else seems to be so on the down low with it. From what I have been told from a gay friend who use to work with my ASO as a Peer Counselor, every time there are meetings (support groups), no one shows up. So what does that tell you about my quaint little town?

I stay in a small community. I am very sociable and love to go out and have fun. I'm only 25 and got infected March of 2007 by my bf. We are still together. We live normal lives and that's how I like it. It's not that I'm sleeping with anyone else so I don't tell anyone. I didn't tell no one really but my mom and sister. They still love me for me and just behind me 200 percent. There are certain people hints...online that I do share my HIV status with. I vent online. This is my so called therapy. I'm trying to get my bf into it, but its hard. He hates that he infected me. Although he didn't know until I got tested the third time that he did. I actually diagnosed myself...haha yeah i can laugh about it now. I just had that gut feeling as she pulled the needle out of my arm I just knew something was wrong. Since he is 12 yrs older than me I thought well he doesn't have anything so I should be o.k. The first time I got tested I was negative in 06, and I got tested again the end of that year. Again Negative...I don't understand what went wrong. All I know is that he said he got tested the end of 05 and hasn't had a gf since then. I don't know. Maybe he should've went for a follow up, because my health clinic did not contact me at all. Someone else did in a totally different county and they didn't deliver the news correctly. Bluntly said, "Yolanda you tested positive for HIV." I was like DAMN!!! I knew it! The first guy I actually fall for and trust gives me this.

Anyways enough about that. I'm content and I love my life just the way it is. There are certain people that you know are going to be ignorant to the fact regardless so I tend to just not tell them about it. It's not so much as a secret, but as a comfort zone. If the town knows then I will be subject to make appearances at the high schools and talk about having HIV and living with it. I might break down and everything on stage. That's not the spotlight I'm looking for at the moment. When I'm o.k. with sharing I will. Until that time I am not going to disclose my HIV status to a person just to be having a casual conversation. I haven't told my best friend, because I feel that she doesn't have to know. If she finds out then I will tell her, but I really don't want to. That's just my choice. And not telling everyone and not trying to think of what they may say about me is comfortable to me. I hate people that judge me and not really know the real story about what happened and what it lead to. And after being infected why I'm still with my bf. Those are questions that him and I only know. No one else will understand.

Due to being outed about my status by my sisters and not given the choice to disclose. I say it is secrecy and privacy if that makes sense. I will not front, I have had sex w/o disclosing but I kept it safe. When I feel comfortable enough with someone then when the time is right, I will disclose. The only people I make aware of my status from the door is doctors or nurses so that they protect themselves. But I have had nurses draw blood w/o even wearing gloves but knowing they are drawing for cd4 and vl. Because of what my sisters did, I no longer believe (at least where I live) that I can trust to share my status with anyone other than someone I know who is poz. I joke and say the only poz people in my town are me and my gay friends because everyone else seems to be so on the down low with it. From what I have been told from a gay friend who use to work with my ASO as a Peer Counselor, every time there are meetings (support groups), no one shows up. So what does that tell you about my quaint little town?

Exactly! I know my best friend would do that and tell all of her friends which are our high school friends. I know how you feel about small towns. Seems like everyone doesn't feel to talk about it unless they have a program at the school. And that's only one week out of the year. There's only one day a month HIV/AIDS patients comes in for CD4 and vl..and that's every tuesday and it's only my bf and I that goes there and older patients with diabetes or whatever they are suffering from or living with. Seems like it's just him and I, but they claim that York, AL is on the verge of being high counts on HIV but the following city in Demopolis, Birmingham, Tuscaloosa, and Choctaw has high percentages. I'm saying if that's the case then there should be like at least 40 that shows up from our town.

But I have had nurses draw blood w/o even wearing gloves but knowing they are drawing for cd4 and vl.

me too, lots of times. It makes me feel good, knowing that they think that it's not that dangerous. I guess when they see you're on meds (the check for their level too) they figure out you're undetecteble. It's the skillful experienced nurses that often forgo the gloves. since I have but one little vein, I'm quite happy to get them. But one time I had a young boy, a med student maybe 20 years old, do it without gloves. I asked him if he wasn't scared, he said no.

In respect to the small town, how about small country? although my 5 close friends and parents know, I am so paranoid in my home country I wouldn't even tell most doctors, seriously. It's much easier for me to feel free about it as a foreigner. Then I don't feel people are interested in gossiping about me at all. If I move to Spain though, I'll be very very careful till I figure out the mentality of the people there.

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"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

I hate to say it but even some in the medical field can't be trusted and aren't they suppose to keep it confidential? I'm not sure if it has happened to me, could've in the past but has heard of it done to others. Actually it was a nurse who told a co-worker of mine to tell me to get tested, well, the co-worker knew my ex and we use to fool around. But even with him knowing my ex was poz and he didn't disclose to me, the co-worker didn't run for the border, actually we kept fooling around a bit longer.*sighs* If only I could find someone like him.

I have not told any of my friends or coworkers. Only my family and close family friends know. I choose to be private although being private can sometimes feel like the burden of having a secret. Maybe someday I will be ready...

This topic has plagued me for quite a while. We've not been secretive about Mini's status. She doesn't walk around with a big "A" on her chest, but the people who know her also know her status. So far, we've not had a bad or negative reaction (except from 1 stupid ER nurse, but the reaction was to me, not to Mini). Mini will also speak about her meds and status with great confidence and comfort. We've worked very hard to make sure that HIV doesn't become a "dirty" word.

That said, Hubby and I are VERY protective of her. If someone has questions, we insist that they are asked of us and there are certain questions that we will NOT answer under any circumstances. Our intention was to bring HIV out of the shadows, to make it less "shameful" or scary and, by vertue, take the "shame" and fear away from her.

But, lately, I've been thinking about it more. By taking away the "secret", are we violating her privacy? Should we be more careful or teach her to be more careful about when, where, and with whom she talks about it? On one level, it makes scense. On another level, it seems that we'd be going backwards - putting the "shame" back into it. I'm not sure that's I'm explaining it right. Basically, where is the line between not making her feel that part of her life is a shameful secret, and respecting her privacy? At 7 1/2yrs old, is there even an expectation of privacy?

tendai

i havent told a lot of people, no-one in my family knows and i dont want them to know, its private. and i sure dont want noone telling anyone on my behalf thats for sure. soo its my secret. i think it means the same "its my own business"

mum - i just think mini should grow up not being ashamed or embarrassed by her status and able to stand up to anyone who makes ignorant or hurtful remarks or actions, even as young as she is. what does she think about it?

We've not been secretive about Mini's status. She doesn't walk around with a big "A" on her chest, but the people who know her also know her status. So far, we've not had a bad or negative reaction (except from 1 stupid ER nurse, but the reaction was to me, not to Mini). Mini will also speak about her meds and status with great confidence and comfort. We've worked very hard to make sure that HIV doesn't become a "dirty" word.

I think you're doing real good by her. If you kept it secret, she would have a huge burden when she has to decide who and when to disclose to. It should be like that for all of us really. I think there is a huge difference btw letting people in the community with whom you have close contacts know and turning her into a poster child for HIV, which is, I think, only a decision that she should be able to make as an adult, and let's hope that by that time, it won't even be an issue b/c there won't be any need for it b/c people will talk as freely about HIV as about any other disease. That would be the ideal, of course we don't shout all our conditions from rooftops but what a world of difference btw mentioning you have diabetis & or even depression, & mentioning, "disclosing", HIV. I mean, no one "discloses" diabetis or even hepititis, do they? It should be, if you're comfortable discussing health, than you're comfortable enough to say you have HIV, no?

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"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Drag, you hit the nail on the head and said exactly what I was trying to say without being able to say it. We have children with a host of mental and physical health issues. HIV just happens to be one of the "things" on the list. You also make an excellent point about how we distinguish between "discussing" all other health issues, but "disclose" our HIV status. I've never thought of that before, but it is very true. I,honestly, would love for her to be the poster child for pediatric HIV/AIDS. She's outgoing and doesn't let anything, her HIV, diabetes, cerebral palsy, dyslexia, dysgraphia, stop her from doing anything. But, I also agree that it will have to be her decision to make when she's old enough to make it.

Tendai, you asked how Mini feels about it. I asked her how she felt about having HIV and she said , "Fine." Then I asked her if she wished it was a secret. She said, "you aren't supposed to keep secrets unless it's about what daddy got for your birthday." *shrug* What else is there to say?

BTL -- the issue of secrecy versus privacy has been a big one for me as well. When I was first diagnosed, my therapist brought up this concept for me as I was guilt-ridden about not disclosing my HIV status to my parents.

For me, there is a huge difference between the privacy an secrecy. In the beginning I believed I was carrying around this huge secret -- my HIV diagnosis -- I felt my secret could get out and crush me at any moment. Now, I am able to see that my HIV diagnosis is not a secret, but rather something private that I can share with others at my discretion. I no longer feel that I am hiding something from my family or the world in general, I feel that my health is something private that I choose to share when appropriate.

It took awhile for me to come to terms with this, but I am comfortable with it now. HIV as a private issue versus a secret allows me to be more comfortable when I meet people or interact with people that don't know my status -- I know longer feel as though I am lying or hiding something. It was a big transition for me.

Minis Mom -- that's a really tough one. I think Drag gave you some wise advise. I think Mini is lucky to have you -- (as you are to have her!) -- and it sounds like you are doing an amazing job. (I read your posts)

Take care,

Sara

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BeTheLove

First off-- Big hugs to you and Mini!Secondly, I just want to applaud you for supporting her in recognzing that her HIV is NOT who she is and is not anything in which she should carry shame over. I trust this small, loving, brillinat child will find her own truth and way through the masses of ignorance as well as the masses of wise, loving, and compassionate people. To teach a child to live without shame is one of the BIGGEST gifts I think any parent can bestow upon their child. It sounds like that is exactly what you are striving to do and I just want to thank you for that.